Wish I could be in the Hebrides too, I'm so envious. That aside, glad the chest cold has been dealt with. Take care, Seth.

Live your life. Give cancer it's due diligence but do not allow it to steal one moment of your fun... hugs and have fun in your travels.

Time for a (longwinded) update!

Thursday I started Cycle 4 on GDC-0980, all of my various blood-work levels are good so they've authorised me to continue and issued me my next month's supply.

My white blood cell count is slightly high, but has been throughout this trial and is probably related to prior chemotherapy. I�m slightly anaemic, but only slightly and they are not concerned. My potassium, which was slightly low two weeks ago, has rebounded. Basically no issues.

I feel generally the same, so 'stable'. No scans today (other than an ECG, which was fine) so won't know more until two weeks from now when I do have another CT scan.

I asked a few questions and had the following answers:

1) By what mechanism does this drug cause weight loss? They don't really know - it's more of a case that this has been observed in some patients taking the drug. It was noted that metastatic cancer in and of itself can cause weight loss. It's also possible that because this drug works by inhibiting certain biological 'channels' that this cancer relies on, this same effect might block my ability to uptake/process glucose, which is why they monitor my blood sugar, in case of elevation. So far this has not happened to me. So if any weight loss is even caused by this drug, it�s at a cellular level and has nothing to do with the bugs in my gut (as in the use of antibiotics that kill off your good bugs).

2) Why must I fast before and after I take this drug? Simply because they haven�t done the food-interaction studies with this drug and don�t know what effect this might have.

3) I asked about my minor non-productive �asthmatic cough� and was told that this is a common inflammatory reaction to the kind/location of cancer I have. So, it�s just the new me.

4) I asked about my sense that while bicycling to work I�m not able to process quite as much air, and was reminded that while this drug appears to have halted the cancer, it remains true that my left lung is effectively not as large as it was, due to �pleural effusion� at the base - that�s fluid accumulation and cancer in general. One�s lung usually has this long pointy bit that extends down the (I think) outside of your torso, and mine�s sort of squeezed off. So likely this sense of reduced athletic capacity is simply down to this, my lung is not as voluminous as it once was.

5) Last weekend while motorcycling in inappropriate clothing I got very chilled and had a first-time episode of Renaud�s Syndrome, where the blood vessels in your fingers spasm and squeeze the blood out of your fingers in response to vibration, turning them white! They don�t know if this could be related to this drug, but said as a one-time occurrence with very good reason (chilled on a vibrating motorcycle) in bears monitoring but nothing more.

6) Lastly, I had heard that another patient had been on this drug for three years but then had to end the trial, and I asked what happened. In that patient�s case the cancer changed and the drug stopped working. Some people never see any benefit, or only a very short-lived benefit. In my case this is the start of month 4 and it appears to be working. There are no guarantees in any of this.

Onward Through the Fog!

Hugs,

-Seth

Hi Seth,

Not too much here that I can respond to with any authority, but I can say this; your weight loss is not necessarily related to whatever chemo you're getting.

The body's metabolism goes into a super-secret-it's-so-high gear, and burns energy at a rate never seen in ordinary life, when it is healing from MAJOR trauma (of which cancer and cancer-treatment both qualify).

When I was shot up, I went from 236 to 145; and when I had my right chest crushed (flail chest), I went from 216 to 154. When I got Cisplatin and radiation in my initial cancer treatments, I went from 192 to 154. Finally, just recently this year, I had my liver packed with radioactive SIRIspheres and just this month, 3 weeks of Beam radiation.

With SIRIspheres, I went from 165 to 154 (haven't gotten back to 165 yet) and with the beam radiation, from 160 to 155.

I have had NO chemo during these later radiation treatments (beyond the initial treatments.)

So as I said, simply surviving trauma is intensely energy intensive, and failing to consume adequate nutrition during that period; the body will consume itself.

Thanks for the update, and details Seth. Seems like you're holding your own, especially bicycling to work, and happy that this trial is working, minus some side effects.

You've asked some really good questions. Thank you for sharing. It is of great interest to me how you react to the trial drug as John is in a trial too.

So glad you're doing so well...

Being in the 'trial environment' has been very interesting. Clearly there are a lot of very different compounds and approaches being studied right now, which is exciting. It's also pretty clear they still have a lot to learn about cancer and how it all works. It seems they are realising every cancer, and every person, are different. This is only my own observation based on being immersed in the study environment, but there you have it for what it's worth.

But many of these have unworkable bad side effects for a lot of people. They're quite happy with me as I'm doing 'so well' on this trial drug.

Here's hoping it lasts!

glad to hear you're doing well Seth. Time will buy lots of new and improved treatments. Hang in and enjoy.
all the best
rob

Hi Seth, So great to hear all is going well and that you are still biking. Fantastic news! and thanks for your thorough update.

Best,
Mary